The name of the service user has been changed
Situation: Stefan Gorky, 35, has been diagnosed with bipolar affective disorder (formerly known as “manic depression”), which is a mood disorder. Sufferers have extreme mood swings from the lows of depression to elated highs, known as mania. Stefan had his first manic and depressive episodes last year. He was voluntarily admitted into hospital where he spent six weeks. On discharge home his spirits lifted but his life seemed empty as if in a vacuum.
Problem: Stefan spent six months or so “recovering”. His confidence was low and he lacked the belief that he will be capable of doing his job as an office manager again. He also feared the stigma of such a return to work. He described time as being an “enemy” to him: something that had to be filled – although he can’t really recall how he has filled it. However, with the support of his wife he did return to work. Unfortunately after a few months he was told that his work was poor and was no longer competent to do his job. He was demoted. His whole world has fallen apart again. Since then he has suffered four more episodes (two depressive and two manic) and has recently resigned from his job on health grounds. He sees his life as pointless now and considers himself a social outcast. His wife remains supportive but is at a loss what to do.
Practice panel: Milton Keynes mental health team
David Glover-Wright: Family advice and support team manager
Sarah Dewey: Service user development worker, People’s Voices
Kathie Pace: Community psychiatric nurse, CMHT
Mike Varney: Approved social worker, crisis rehabilitation team
Jane Ross: Community psychiatric nurse
Stefan has experienced a major life crisis. He’s had a lengthy inpatient ”episode” followed by a significant period of “recovery”. His admission should have prompted the involvement of a care programme approach (CPA) co-ordinator. Their primary focus should be preparing Stefan for his return home, encouraging his wife to gain a better understanding of his needs and drawing up plans for a gradual resumption of roles and responsibilities. This requires a significant level of mutual understanding if the eventual care plan is to “exist for the benefit of the person using the service and (is) based around their needs”, according to CPA guidelines.
The co-ordinator is usually assigned to a person’s care only when discharge from hospital has been arranged and the person is already at home “on leave”. The care plan is hastily compiled with little time to understand the wider social circumstances.
Stefan’s work difficulties might be entirely unrelated to his mental health issues. There might be underlying personal difficulties which have affected his working life predisposing him to a mental health breakdown. Mental health crises rarely occur in isolation and Stefan needs support to understand his own particular circumstances.
The care programme approach emphasises a whole-person approach but limited time and resources make it easier to focus on symptomology, treatment plans and “concordance” with medication.
A superficial, rushed approach might miss crucial relationship and gender issues. His wife might have encouraged a quick return to work to stave off financial hardship. Stefan probably views work as a crucial activity given the status and identity it affords him. He is keen to move on from his mental distress and will be covertly pressured by his awareness of stigma. Any attempt to help him validate his mental health issues alongside his cultural and social values will be undermined by an unsympathetic employer and a wider society that continues to demonise mental distress. Stefan needs to regain his confidence through effective recovery. This might mean taking a step backwards but without the necessary support, his recovery is going to be impeded.
Stefan and his wife have undergone major relationship changes since he entered the mental health system. He appears to have quickly lost a sense of purpose and identity in life. It would seem that early opportunities to prevent this have been missed by those working alongside him. Effort should have been made to help Stefan keep his job during his episodes of illness.
With Stefan’s agreement mental health workers could have discussed with his employers the benefits of making reasonable adjustments to allow him to return to work. If someone is at risk of losing their job, then part-time, flexible hours or a reduced workload would all be options that could be explored. In this case, keeping an experienced manager might have benefited not only Stefan but perhaps the company economically.
As Stefan gains a sense of worth from his role and status in employment, now would be an opportune time to encourage him to look at what skills could be transferable to other roles and how he can develop any existing skills that need to be updated, given that he has been out of work for more than a year.
The day-to-day change in the couple’s life may be a stressor in relapses. If the couple are spending more time together then it may be that they both need to re-evaluate what they do. The issues thrown up by one member of a family being labelled with a mental health diagnosis should be addressed with the family as a whole. Although one has a label, any change or “recovery” will impact on the whole family as much as the original diagnosis.
The couple may need space to think about what they want in terms of recovery and need to change their lives from being ones dominated by (very real) fear of stigma and diagnosis to ones that accept what has happened. By working with mental health workers they trust, they could begin to identify steps towards their own goals and find ways to remove barriers to achieving them. This could provide the basis framework for planning at a genuinely user-centred care programme approach meeting. CC
From the perspective of user-focused outcomes, the mental health services have done little for this man: he is still experiencing mood swings, he has lost his job, and his self-confidence is close to rock bottom, writes Kay Sheldon.
But Stefan’s experience is not unusual. Despite assertions by the services that they use the recovery model or that they take a “holistic” approach, this often does not translate into tangible benefits.
A common experience is for service users and their families to be given help at times of crisis and then left with the occasional out-patient appointment and perhaps a course of cognitive behavioural therapy. For some people this minimal contact with mental health services is the best option. However, there are others like Stefan who are left to stagnate they have to struggle to understand and overcome their mental health difficulties with little help – an approach usually justified by the mental health services as not wanting people to become too dependent on them.
However, it is possible to work intensively with someone with an approach based on self-determination and empowerment. I feel Stefan would benefit from a thorough assessment of his psychological, social and occupational needs. From this a treatment and therapy programme can be devised with Stefan at least an equal partner in it. As he feels negative and despondent, the staff working with him should put a lot of effort into encouraging him and building up his self-belief.
It may be that Stefan would like help to find out whether there is medication that suits him and helps control his mood swings. It can be trial and error and can take years because clinicians are slow to find the best option for an individual patient.
When Stefan is ready, various therapies (talking, art or music) could be offered. He already has many skills so it is realistic that he could work again. Barriers to overcome will be lack of self-belief and prejudice from employers. Help could be offered to support him returning to work, such as more training, voluntary work or, if he wants, taking part in a suitable project to get disabled people back to work.
Finally, Stefan’s wife should be involved so that she is able to help and support her husband. There is no reason why Stefan cannot live a full life. The mental health services need to work with him to arrive at this point. This should be the successful outcome from the mental health services’ point of view as well as from Stefan’s.
Kay Sheldon is a mental health service user
This article appeared in the 15 March issue under the headline “Outside, barely looking in”